Public Involvement in the NHS

is LINKs the way forward? conference, June 25th 2007

Notes by Ruth Marsden – apologies that they are rather cryptic

A) Richard Taylor MP:

Timetable of Bill unsure. 2nd reading in Lords on 20th. Whiffs of optimism. There are positive things we can be doing.

‘Balance of evidence says that Forums are right.’ Strongest statement. Gov knee-jerk reaction, not properly tied and tested. Gov Response to Health Select Committee Report not particularly helpful. It says ‘LINks have been designed —‘, but where is the design?

HSC tried to find a model eg Forum plus with Forum at the core and the rest evolving. RT pushed this very strongly. Or network model but this was ‘vague and woolly’. Health Care Commission supports the ‘network’ model very vigorously, as if they felt threatened by anything else. Anna Coote for HCC. Gov Response didn’t come down on either side. HSC feels that the lack of clarity will make for confusion and inactivity.

Key things now are:

-gov structures informed by Early Adopters. The gov hopes Early Adopters will come up with some advice. RT disappointed at last of anything from EAs, few responses and little practical advice.

-crux is inspect! HCC used every word but ‘inspect’. Vital that Links have right to go into establishments. The Public Bill Committee managed to get one essential clarification. Bill did say “may make—“ and now says “shall make regulations re a duty to allow entry—“. Great, great concern that making visits will be made very difficult. Have to ask first etc. Very small no of active members and lots and lots to visit. Need training, CRB, understanding of confidentiality etc. All seem checks and limits. But hopeful in that it indicates there must be a core, in a LINk. HSC said it was crucial that there should be visits, a core should visit. Gov response was “we agree it is important that a core should be trained-“.

-Section 11. HSC very worried that this is weakened. Sec of State very rarely uses the Independent Panel as it is. A reshuffle in the Cabinet is expected. This may change emphasis on this point.

-funding. It is common for the gov to ‘count money twice’ It says £X is available for things but much of it turns out to be existing money. Fears of same with LINks. Money for Forums already inadequate. National Centre for Involvement only has £2m

Bill in Lords on 20th June. Freddie Howe very articulate on shortcomings of proposals. “LINks are only described in terms of what they are not.” As LINK not defined it cannot be a statutory body. All this nebulous drafting needs fleshing out in Committee. Chance in the Lords of getting this done. Julia Neuberger said that LINks had very poor capacity to hold providers to account.

Grounds for optimism:

!. -Open Day Motion in Parliament. About Parl. participation in decision for armed conflict. The gov replaced this with words of their own and there was no difference! RT went to Jack Straw, who is Blair’s campaign leader, and asked what the difference was. JS said “I wrote the gov version but I was so busy, I did not know what the original opposition motion had said”. Hence the gov saying what the opposition had said in the first place!

2. –the Mental Health Bill. Already been through scrutiny /Public Bill Committee and no useful changes. To everyone’s amazement, 8 Labour back-benchers of the Mental Health Scrutiny put in an amendment. It didn’t get in. However, it took the patients’ side re treatability etc etc and was a rare sign of Labour Back bench rebellion. RT inquired what was going on and was told that a group of Lab MPs had decided to recognise their duty to “hold the government to account.”

So HOPE in a) reshuffle of Ministers and b) back-benchers.

Vital to put pressure on Lab MPs.

Also Gordon Brown’s speech on 60th anniversary of NHS talked about ‘more power locally’. Likely to be a very big reshuffle. RT hopes that Andy Burnham gets Health as he is ‘thinking and listening and knows his stuff, and knows something about health and the NHS’

Hopes that Gordon Brown will ‘lay off, stop ‘reforming’, listen and leave things alone.’


-time to get to grips with issues. Consultation Paper coming at end of July, describing for the Regulations LINks’ powers. Must tackle Lab back-benchers to insist LINks have:

  • access
  • structure
  • powers

-Lords are getting on with things in the Committee stage

-if Rosie W goes, not realistic to expect a new Minister to take all this on.

-if Lords introduce amendments, there’ll be much ping-pong back and forth to Commons.

-some talk of a Constitution for the NHS, direct elections to PCTs etc. (Hazel B and Alan M) Patricia H. spoke of same at LSE.

B) Jonathan Tritter from NHS Centre for Involvement

Lots of unknowns. LINks based on advice of Expert panel. Tensions. Foundation Trusts. HCC and CSCI try to take collective view into account but don’t do it very well. Issue of IS in it for profit. Praise for the ‘usual suspects’ the nucleus of people like Forum members who are involved.

Genuine patient choice is very expensive, almost impossible. Patient voice the same. PPI must deliver impact and results. National Centre for Involvment has three years of funding. Currently it supports NHS institutions re duty of Section 11. Has no formal remit for LINks. Lack of evidence of what works.

PPI Forums have worked best looking at non-primary care NHS

National Voices organisation provides for voluntary sector like Macmillan nurses who have no local constituency or base or presence and so couldn’t use LINks

Many l.a.s already have ppi initiatives. Could pool resources and come up with bit more money this way.

Forums wary of l.a.s. Some examples of “inappropriate behaviour” ???????

National voice for LINKs?

Compromise of benefits for those in LINks? DWP issue. Unresolved.

Collaboration between LINks? NE ambulance service covers 23 LINks.

One host for three LINks to economise? Quality of hosts. Some FSOs excellent, others bad.

NCI is writing guidance for LINks. It will take time. Perhaps a year’s experience of EA? PPI Forums will be involved. NCI will come up with a draft, send it to D of H and then it will go out to wider consultation.

D of H foisting stuff onto NCI to do. What about independence therefore. Training module for LINks members?

When CPPIH goes, NCI will be the only thing left.

If LINks don’t work, it’ll be the end of PPI. This is the last chance.

NCI is not a regulator, not wielding a stick. They are a ‘carrot’, here to help. NCI sceptical of LINKs’ reports going anywhere. There’s no capacity to read, theme and act on them.

C) Malcolm Alexander and Ruth Marsden

Explained about the National Association, why it was necessary, why it was so late coming, what it had done re press releases, meetings with Lords, briefings for Lords, meeting with Meredith Vivian etc. Outlined great concern about transition and the ‘gap’ and lack of assistance from Dept of Health re contacts within local authorities.

MV failed to understand value of volunteers. Said that reimbursing LINks’ members’ expenses was “down to local determination”. (favourite phrase, apparently.)

Bill confusing and vague.

Much debate followed.

D) Sally Brearley

Involvement was overrated. Influence was what mattered Too much tokenism. Being trumped by more powerful players. Foundation. Trusts closing meetings to public. Their members and governors elected by tiny minority. Need for direct access to Independent Sector too.

LINks need teeth, clout and power! Remember that “relationships work best under the frisson of fear”.

After that, meeting agreed priorities.

  • continuity
  • specialist services
  • forum plus model, governance and development
  • entry and inspection


  • access to Independent Sector
  • Section 11 (now 242) Duty to consult.

RT=Richard Taylor, MP

JT= Jonathan Tritter of national Centre for Involvement
MARM= Malcolm Alexander and Ruth Marsden
SB=Sally Brearley

Ruth, 27th June 07